During my journey through chronic pain and debilitating inflammation, I’ve gone through so many phases that I can’t even describe them all. Some of them were more difficult than others, some of them lasted longer than others, and some of them even made re-appearances along the way. Looking back, though, I’m really happy that I went through all of these ups and–yes–all of these downs.

And come to think of it, I can’t even really describe this current phase that I’m in, other than to say that I’m really liking it. Now, what follows is the *last* thing that I ever thought I’d find myself saying, especially considering just how bad the pain can actually get at times. What I jotted down, only a couple of days ago, was that I’ve found that dealing with the physical pain of RA seems relatively easy, when compared to the challenges of dealing with all of the emotional pain, feelings, and thoughts that result from living with chronic illness.

Okay, so let me be clear…I am in no way trying to minimize the physical pain that is caused by rheumatoid arthritis. Those of us who live with it directly know how severe, and overwhelming, it can be at times. Looking back at some of my recent posts, however, I’ve started to recognize the emergence of certain themes, which are the difference between physical pain and emotional pain, and the importance of being able to distinguish between the two.

I guess what I’m saying is that all of this emotional pain that I’ve carried around for years, which I’ve always seen as a given, is actually quite optional. I have only recently come to recognize as much. Now that I’ve decided to just toss aside (this might not be the best way to describe my actions, as I’ve certainly not ignored my feelings…maybe “moved past” or “worked through” is better) a lot of this anger, depression, frustration, fear, and concern about what other people might think/not think, all I find myself left to deal with on a daily basis are the physical challenges that result from my pain and disability.

Which are certainly still significant, mind you…but stripped of all the items mentioned above, everything just seems so much…easier.

A couple of hours ago, I had a pretty major flare. As my mind and body started slipping away, I told myself that I needed to hold on to a positive thought. (This is something that I’ve gotten into the habit of doing during the past few months, even–especially–when my pain is at its worst.) This afternoon, however, I didn’t even have the energy to form an entire thought. All I could come up with was one word: respect.

I repeated, and visualized, this word to myself over and over for I don’t know how long. Eventually, my flare passed…but I was left wondering why I had chosen this word. I’ve written previously about respecting my limits, and not pushing myself too hard…but this isn’t exactly what I was referring to, when I was deep down in my flare.

And then it dawned upon me. I’ve always envisioned my body and my illness as two different things, connected yet separate. For the first time ever, though, I finally thought of them as one integral whole. And as I did so, all previous associations related to ‘me versus my body’, which I’ve carried around (as well) for all too long, slowly started to melt away.

What I was respecting during the midst of my flare, in fact, was myself. And as I respected myself, I felt no need to distinguish between my body, and my rheumatoid arthritis. Yes, I was in a lot of pain…but believe it or not, I actually felt good.

If I keep telling myself that this is hard, then things are only going to continue getting harder. So, I’m going to change my perspective, and try the exact opposite approach. I’ll let you all know how it works!

I loved this post… So true, that we carry around a lot of “optional” pain, and when focusing on the good things all around us, that pain diminishes and we are only left with what is actually there in the first place.

interesting and thought provoking!! Today I am experiencing total frustration at being able to do nothing for the pain I am in. Pure, raw physical pain that leaves me feeling helpless. For me, not having any control over the physical pain does make me realize that I do have some control over how I deal with the emotional pain that goes with this disease. Interesting how many times I have allowed what I can control to totally take me over, thus compounding the physical pain.

1) Recently I went through a time of grieving after watching my daughter play volleyball…why the grieving? Because after 30 yrs of living with the disease, I still have times where life reminds me of what I lost and was capable of doing in an ‘able body.’ I absolutely LOVED playing volleyball as a kid…and I hadn’t thought about it for years…UNTIL my daughter played. Afterwards, I remember saying to my best friend, “You would think after living with this disease for 30 years that I would be done grieving all the losses.” But, what I learned that day is that there will continue to be ‘losses’ in relation to the disease; and that I need to allow myself some time to grieve. BUT, I also need to be grateful for the life I have been given AND to make the most of my life DESPITE my disability.

My Mind and Spirit have been in a super-exclusive club. Team Intuition. Knowledge. Compassion. Intellect. Learning. Discovery. Spirituality. We’re on top of it. But my Body, ever the uncoordinated, under-achieving, scrawny kid, picked last for netball. What about my Sporty Side. My Sexy Side. My Rough and Tumble Side. My Senses. Taste. Touch. Smell. SIght. Sound. What about Pleasure? My Instincts? My Sensuality? This illness (which I’ve never claimed as MY illness, hoping to keep it separate from me) has disconnected me from my Body because it would do scary things. Because I am in PAIN a lot of the time.

Mindfulness. Meditation. Understanding interdependance & impermanence. Love. Choosing Delight in each breath. Are truly allowing me to heal myself (along with my Wonder team of Holistic Doctor Accomplices). They make dealing with the pain Easier. And my Life, more beautiful.

This post reminds me of a heated discussion I had recently with my rheumatologist. We discussed the concept of chronic pain and how it can change depending on our emotional outlook. At times the pain is worse because we are not emotionally strong – that could be because of: sleep deprivation; hormones; work; stress; relationships – the list could be endless. But when we are emotionally strong the pain is not so bad. But you know what, some times pain is just down right shitty no matter how you emotionally feel. I think it is very important to recognise the difference between the two and still be okay it. I will be blogging about this concept soon too. Thanks for your website – as always. xo

Very thought provoking. I’m an optimist by nature but when the pain drags on it wears me down and my spirits too. I have also been one to say “my body has abandoned me”. But as one poster said, I do have good qualities left in my body and maybe I should start remembering that and pay more attention to what its telling me. I get to a point that I stop caring about my body and do what’s nessicary to stop the pain and treat the disease, but forget about the other needs my body has such as excersise, hydrating, etc… I believe in an eternal afterlife so my thinking has been to keep the spirit and mind whole. This thread has made me realize that I’m angry at my body and neglecting it because of that. Time for a mental overhaul….Thanks for the thread.

I love this post, it’s so empowering. The mind is such a powerful tool & I’ve always tried to keep that positivity within me. I once had a GP who’d treated me since well before dxn, who herself years later was also dxn with RA. When she chose to share her dxn with me she told me that my positive attitude and way of dealing with RA had given her hope for how she too would confront this journey.

As you said RA Guy, the pain is only one facet of this disease & I firmly believe that the way we handle the other facets can impact on the pain.

Thank you so much for being able to put into words what I have been struggling with. I was unable to use my hand for the majority of the past week and the emotional rollercoaster that goes along with the flares is scary. Since then I have been combing through RA blogs and websites to find people who understand what I am going through not just physically but how I am wholly impacted and how to go about accepting these changes. Thanks for letting me know that I’m not alone going through what I’m going through.

Excellent post RA Guy! We are not our diseases, but we do need to realize that we also cannot keep a disease that affects almost every portion of the body either through the disease itself, meds and their side effects, or co-existing conditions separate. It is inside of us and a part of us.

I think we can acknowledge how hard things are without focusing on that and making it worse. It’s not easy always to not focus on it but it is possible I think. Since I’ve been home from the nursing home, I haven’t had a great deal of discussions about my RA and all it entails. But the few I’ve had have all been fairly positive. One was with a door greeter at Wal-Mart. I’d just left the appointment with the new GP and was frustrated at being treated like I was stupid. So my mood wasn’t great and I was in a great deal of pain because I had a 2pm appt and got there by 1:30 to so paperwork, then waited until after 3:30 to be taken into an exam room. By the time I was ready to leave, it was almost 6pm. Needless to say my mood wasn’t great. I had meds with me of course, but I had long finished my drink and never really had the chance to ask for a drink. I ended up chatting with the door greeter while my hubby was getting me a moterized cart. She asked how I was and I said great now that I was outta that doc’s office. We somehow ended up talking about. RA and my new freedom. She didn’t know me but was so happy for me. Then Thursday evening we were a my son’s tae kwon do class. I was chatting with another mother as our sons were sparring. I mentioned that my son’s knee was hurting. We ended up talking about JRA and how mothers who have it have great concern for their kids. Both ladies commented how hard it must be to have RA. My response is to acknowledge that it CAN be hard at times but that you adapt and get used to it. Saying that doesn’t make it harder, it’s when you focus on it that it gets harder.

Positivity in life is key. I also think pain and how it’s experienced has a lot to do with personality. Some people are born optimists and some aren’t and it is harder for the “life sucks” people to come out of the dark tunnel they are in.

Dwelling on pain, centering your mind on the pain first and life second is not the way to go. Say yes to what life throws at you and then deal with the difficulties if they should turn up. Go to that party even if you feel a little crappy, coz you know what – there’s a good chance if you spend a few hours with friends laughing the night away, that you will go home in less pain. Try it. Works for me.

I agree with you 100%. It’s all about perspective. I have two mantras and I live by them. “it is, what it is” and “it could be worse”. First you define the situation. I have RA. I will always have RA. I didn’t lose anything. I moved on to other realities, my life was redefined. Instead of mourning the loss of what and who I was, I spend time discovering who I am now. Change was inevitable. Would have happened without RA. Probably different changes but there would have been changes. That’s life. Ever-evolving. Yes, flares suck but there are worse things in life… So I move on. One foot in front of the other. I am still me and RA and its pain are part of me now. I try not to dwell on the pain and I strive to be the very best me that I can be. Very similar to what I would be doing if I didn’t battle the monster… Be well, everyone.

RA Guy, this is a fantastic post and I’m glad that you have pushed through to this level of understanding in relation to the mental/physical aspects of living with this disease. Where you are now is a MAJOR step towards even more discovery and hopefully positive strides in managing your illness.

As someone diagnosed with Lupus, RA and Raynaud’s, I personally know that the mental/spiritual healing and breakthroughs often precipitate physical breakthroughs as well. Wishing you the best!

I’ve had rheumatoid arthritis for 34 years. Seven years ago, I learned about stress and how soaking in negative thoughts and emotions triggers the stress response.

Perceiving a threat or danger, real or imagined, the body prepares for flight, fight or freeze by triggering a cascade of 1400 chemicals, complete with side-effects. Those side-effects affect “upstairs”, “downstairs”, “inside” and “outside”.

What a difference it has made to me and the progression of my RA by developing an awareness of my “stinkin’ thinkin’, knowing what to do instead and practising the alternate behaviours.